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Why do publications about LTFU Study results refer to the Childhood Cancer Survivor Study (CCSS)?

Long-Term Follow-Up Study (LTFU) is the name we use when communicating about the study with participants, while Childhood Cancer Survivor Study (CCSS) is the scientific name used by researchers and the medical community. “Long-Term Follow-Up Study” emphasizes what the study is about without disclosing that some participants may be survivors of childhood cancer, thus protecting their personal health information.

You may hear about the Childhood Cancer Survivor Study or CCSS when important new findings are reported in the news. We want you to take pride in the attention the study receives, because your dedication contributes to every advance we make in protecting the health of survivors.

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  • Medical care in long-term survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2008

    Citation: 26(27):4401-9

    Author(s): Nathan PC, Greenberg ML, Ness KK, Hudson MM, Mertens AC, Mahoney MC, Gurney JG, Donaldson SS, Leisenring WM, Robison LL, Oeffinger KC.

    Journal: J Clin Oncol

  • Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: A Report from the Childhood Cancer Survivor Study.

    2008

    Citation: 17(2):435-46

    Author(s): Zeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, Armstrong G, Mertens AC, Robison LL, Ness KK.

    Journal: Cancer Epidemiol Biomarkers Prev

  • Behavioral and social outcomes in adolescent survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2007

    Citation: 25(24):3649-56

    Author(s): Schultz KA, Ness KK, Whitton J, Recklitis C, Zebrack B, Robison LL, Zeltzer L, Mertens AC.

    Journal: J Clin Oncol

  • Body composition, muscle strength deficits and mobility limitations in adult survivors of childhood acute lymphoblastic leukemia.

    2007

    Citation: 49(7):975-81

    Author(s): Ness KK, Baker KS, Dengel DR, Youngren N, Sibley S, Mertens AC, Gurney JG.

    Journal: Pediatr Blood Cancer

  • Psychological distress in long-term survivors of solid tumors diagnosed in childhood: A Report from the Childhood Cancer Survivor Study.

    2007

    Citation: 49(1):47-51

    Author(s): Zebrack BJ, Zevon MA, Turk N, Nagarajan R, Whitton J, Robison LL, Zeltzer LK.

    Journal: Pediatr Blood Cancer

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